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Posted 6/11/2007 10:36 PM (GMT 0)

Hi all,

This is my first time ever posting...hope I do it correctly.  Has anybody experienced dizziness with their migraines?  I have been having migraines since I was a little girl.  They have gotten progressively worse.  My neurologist says my dizziness as well as "head pressure" are from migraines.   I have tried almost every medication out there...none work.  I am also extremely sensitive to medications and they usually make my migraines worse.  My dizziness has gotten sooooo bad. 

Posted 6/11/2007 11:12 PM (GMT 0)
booksbooks:  Just wondering if you have every seen an ENT doctor?  Sounds like you might have vertigo - an ENT might be able to determine the cause.  The only time I get dizzy with migraines is when I am hurting so badly that I can't even see and then I feel a little wobbly and always nauseous.  I don't think I have ever been truly dizzy.

Wish I could be more help but I am sure there are others on here that can give you better suggestions.

Posted 6/11/2007 11:26 PM (GMT 0)
booksbooks: I get vertigo (dizzy) when I get silent migraines. I do hope you feel better.
Posted 6/20/2007 11:07 PM (GMT 0)
hi booksbooks. hope you are feeling better.i just had a migraine yesterday. i did get dizzy with the migrane. i have noticed this is a new symptom for me with the migraine. the last one i had before this one was 4 mos ago and i noticed i got dizzy also. also before the this migraine about 2 hours before the migraine i had a pressure feeling along with a light headed feeling also.  i have read that dizziness can be a symptom. i also suffer from sinus problems, so i dont know where it is coming from. maybe from my head being such in a pressure state that the dizziness comes. it didnt last very long, kind of scarey. hope this helped.
Posted 6/24/2007 12:34 AM (GMT 0)
Hi all....the doc's seem to think I have painless migraines too...Been having them for 20 yrs...but nerological symtoms have been getting progressively worse...including the length of the episodes and severity of the symptoms...very scary...I have slight pressure ALWAYS on the left side of the head, slightly stiff neck and severe coordination problems,severe balance promblems (not really dizziness but off balance and spacial awareness is shot...nothing to bump my foot, arm leg off door frames etc), also have weakness on right side of body.  I have confusion, fatigue>>> I feel totally out to lunch..difficult to do the most meanial of daily tasks....the episodes are without pain and last up to 5 weeks at times...I am at my witts end and have gone to the docs again to have another CT  scan and an MRI...does anyone out there experieince such symptoms for such ling periods of time???? 

Posted 6/28/2007 4:01 AM (GMT 0)
I have had migraines for several years. I have heard the terms "migraine without a headache", cluster headaches, tension headaches, just to name a few. I have never heard of painless migraines. Wish that were the case with my migraines! I could have saved thousands of dollars on ER trips. I am not being unsympathetic. I just have not heard the term before. This sounds lile a really serious conditions. I wonder if this would be some other condition like MS.

Have you had second opinion?
Posted 6/28/2007 2:39 PM (GMT 0)
I have recently been diagnosed with NDPH "new daily persistent headaches", and I constantly suffer from head pressure.  Along with the head pressure I feel lightheaded which varies in intensity along with the head pressure.  The headache specialist I am seeing really doesnt know why I am experiencing the lightheaded feeling, which is really frustrating.  I have had numerous tests done by several ENT doctors and my ears seem to be fine, but it makes me wonder if there really isnt something going on with my ears making me feel this way.  I know inner ear prblems could make someone feel lightheaded, but I dont know about the constant head pressure.

Posted 6/28/2007 2:48 PM (GMT 0)
JKO: I don't mean to be insensitive to your post but I just want to educate. What suffering is speaking of is called Acephalic Migraines. There is a lot of different terms for it migraine without a headache, silent migraine just to name a few. The symptoms can be mild to severe. I have been diagnosed with this along with Migraines with Aura and I am at extremely high risk for a stroke because along with other reasons my silent migraines mimick a stroke. I can't speak or communicate during the height of my migraine. parts of my body don't want to work or is weak.
A lot of time I can't determine when to take my abortive medication since I don't have any head pain at all so it's to late for my medication to be as effective as it should be and because I can't tell if I am having a stroke or a really severe migraine off to the hospital I go. Trust me I would take my migraine with aura anytime over my silent migraine and I don't even want to get into the aftermath of the silent migraine the flue like symptoms, the vertigo, the constipation and then the diahreaha, the medicine head and spacey feeling like I am in dreamy land, the 300lb weight feeling. It just plain out sucks!

I have had three opinions by two neurolgest and one doctor.

Posted 6/29/2007 10:48 AM (GMT 0)
I sympathize with all of you. I've had migraine for about 18 to 20 years now. They started in college for me and at the time they linked them to a hormonal problem. I have to admit, I have never heard of the term Acephalic Migraines. And after reading all of your symptoms, I know I have them. In the last couple of years my migraines have changed alot, as they can and do. I get mild to severe side effects during and around the time of a migraine, which would be my aura. Not only do I have dizzy spells and vertigo frequently, oddly enoughI get that more without the headache, I also have blurry vision, loss of my taste and smell, and my speech is affected. I have also noticed memory loss, which some of has become permanent (no, I'm not going senile yet). I have even heard of complete blindness during a migraine. And all the rest (spacy feeling in the head, pressure, diahreaha, etc) is practically icing on the cake.
Come to think of it, many of the things described here by people, I have often written off as me being "out to lunch" or klutzy, uncoordinated, and its probably all migraine related.
Good luck to all of you. Feel better.
Posted 6/29/2007 12:12 PM (GMT 0)
Hothead70: I sympathize with you and know the side effects that you speak of. Especially the memory loss. I am only 29 years old and I tell my husband all the time I think I am losing my mind because I should not forget things the way that I do. It's scary! Are you on a preventative medication to ease the effects of the migraines? My neurolgist (took me a while to find a great one but once I did it was worth it) said that there are many coctails out there to stop the effects that we suffer from? It is a matter of finding what works for you. Also have you been check for a PFO? If you experience Auras there is a link between Auras and people with a PFO (hole in the hearts) a simple ECHO can confirm if you have it. Studies have been done that a good % of people that have had a PFO and auras had there PFO closed either reduced there migraines by 50% or they didn't have another migraine again. It's worth checking out.
Posted 7/16/2007 2:12 AM (GMT 0)

suffering said...
Hi all....the doc's seem to think I have painless migraines too...Been having them for 20 yrs...but nerological symtoms have been getting progressively worse...including the length of the episodes and severity of the symptoms...very scary...I have slight pressure ALWAYS on the left side of the head, slightly stiff neck and severe coordination problems,severe balance promblems (not really dizziness but off balance and spacial awareness is shot...nothing to bump my foot, arm leg off door frames etc), also have weakness on right side of body.  I have confusion, fatigue>>> I feel totally out to lunch..difficult to do the most meanial of daily tasks....the episodes are without pain and last up to 5 weeks at times...I am at my witts end and have gone to the docs again to have another CT  scan and an MRI...does anyone out there experieince such symptoms for such ling periods of time???? 

   Hello,

My mother has been diagnosed with migraines without pain as well.  Unfortunately she has had constant symptoms all seemingly related to her vision for over 2 years now.  She has no hedache but suffers more from what can be described as visual. Its frustrating because she cannot describe whats she is experiencing.  She says it is not typical vertigo and does not get dizzy but has had symptoms of running into things falling down and periods of confusion or difficulty expressing what she is trying to say.  The strange thing is she first experienced this about 2 years ago taking a trip in a car where she suddenly got nautious and at that time she did experience one headache.  After the headache and nautia subsided she was left with these strange visual symptoms and no headache.  She has seen many doctors who ruled out anything serious yet she has not gotten better and appears to be getting worse.  I would not wish this on anyone.  My mother was a very healthy and funloving woman who now rarely goes out and is fatigued and has these symptoms all the time.  They do not subside.  If anyone out there has experienced this or has any treatments that have been helpful please, please let me know as the doctors do not seem to be able to help.  I would be forever grateful if someone could help make my mother well again.

Posted 7/16/2007 6:07 AM (GMT 0)
i think you need to concentrate on what you are eating. a balanced diet is extremely important.
Posted 7/16/2007 12:26 PM (GMT 0)
BJG: I was dianosed with silent migraines also called acephalic migraines a little while ago ( I am also diagnosed with migraines with auras) I feel you mothers pain. I could handle the regular migraines but the silent migraines were the worst. I never knew I had one until it was to late and then my abortive medication didn't work as well. My silent migraines and regular migraines mimicked stokes and I had what I described as vertigo with them. I wouldn't leave the house when I had an episode and it was very rare that I wouldn't have an episode. My self cofidence was shot to hell. I am a mother of a 4 year old and I felt like I was the worst mother and wife in the world. My neurolist told me to look for my triggers and gave me a list. I kept a diary and still couldn't find the trigger. I eventually found what we think is my trigger and it is Aquafresh Extreme Clean toothpaste (Long story on how I found that out) . Once I stopped using it my silent migraines and regular migraines have stopped. It has been 3 weeks and I haven't had a migraine since I switch my toothpaste. This is the longest I have been migraine free since they started.
Your mother also might want to get on preventive and abortive medication to help manage her migraines. They will help.

Bliss1020: As I agree that a balanced diet is important in any situation I have to ask and I don't mean to be offensive but do you know what you are talking about in regards to this situation?

Post Edited (snugglesrn) : 7/19/2007 2:53:02 PM (GMT-6)

Posted 7/16/2007 1:49 PM (GMT 0)

Snuggles - thanks for posting regarding the diet.  I agree that proper diet is important but when you have a searched long and hard, been to a million doctors, had dozens of tests, etc., the last thing you want is for someone to suggest that it is just your diet.  It's true, however, that all with headaches should find the trigger, if possible but sometimes food has nothing to do with it.  My trigger is the barometric pressure.  What I eat has absolutely nothing to do with my migraines.  The neurologist did suggest, at first, that I keep a food diary to see if there were any food triggers but once we ruled those out, he kept looking.  So, unfortunately, my diagnosis doesn't have an easy answer such as my diet. 

I just think that as a new person, searching for answers on here, it would be a little dishearting for someone to suggest it might just be something so very simple as eating something different.    Just my opinion but I was glad to see you approach the issue!

Posted 7/16/2007 7:09 PM (GMT 0)

For all you well-meaning newbies, adding your experience to a post is fine, but perhaps you should hang around and read old posts for a while, before offering advise on a subject that is new to you.  I don't mean to be harsh, it's just that someone who is newly suffering from migraines, or new symptoms, is not really helped by suggestions from novice posters who do not have a lot of experience in this area.

Dizziness can be caused by a myriad of things, possibly having nothing to do with the migraine.  I've had migraines since age 8, so for about 34 years.  Only within the last several years have I developed a dizziness problem.  I haven't been able to identify the cause, possibly because I have naturally low blood pressure, or perhaps because of some medication I am taking.  I've been trying to determine the cause for quite some time, and have seen many doctors and specialists that couldn't determine the underlying cause.  It's possible that it has nothing to do directly with the migraines or maybe it does.  The bottom line is that over-simplified suggestions are rarely useful, and can really send new sufferers into a world of confusion, which is not particularly helpful.

Feel free to disagree with me if you feel a necessity to do so, either here in this forum, or you can email me directly.

I hope this helps someone.

Leigh Ann cool

Posted 7/17/2007 1:51 AM (GMT 0)

 

snugglesrn said...
BJG: I was dianosed with silent migraines also called acephalic migraines a little while ago ( I am also diagnosed with migraines with auras) I feel you mothers pain. I could handle the regular migraines but the silent migraines were the worst. I never knew I had one until it was to late and then my abortive medication didn't work as well. My silent migraines and regular migraines mimicked stokes and I had what I described as vertigo with them. I wouldn't leave the house when I had an episode and it was very rare that I wouldn't have an episode. My self cofidence was shot to hell. I am a mother of a 4 year old and I felt like I was the worst mother and wife in the world. My neurolist told me to look for my triggers and gave me a list. I kept a diary and still couldn't find the trigger. I eventually found what we think is my trigger and it is Aquafresh Extreme Clean toothpaste (Long story on how I found that out) . Once I stopped using it my silent migraines and regular migraines have stopped. It has been 3 weeks and I haven't had a migraine since I switch my toothpaste. This is the longest I have been migraine free since they started.
Your mother also might want to get on preventive and abortive medication to help manage her migraines. They will help.

Bliss1020: As I agree that a balanced diet is important in any situation I have to ask and I don't mean to be offensive but do you know what you are talking about in regards to this situation?

To snugglesrn:  Thank you for your posting.  I had no idea that toothpaste could be something that triggered your migraines.  Can I ask you what type of preventive and abortive medication you use to help manage your migraines?  The doctor has prescribed triptopan for my mother (I think that is what it is called).  They tried topomax and that seemed to make her symptoms worse.  The only thing I do not understand is that My mother says she feels this way all the time.  When you had a silent migraine what is the longest period of time that it lasted? Again thank you for your posting and I hope you continue to be migraine free!!

To Bliss1020: Thank you for your posting as well.  I know diet can play a big part in migraine prevention and my mother is trying to watch what she eats but so far no noticable change.

 

Posted 7/18/2007 2:56 PM (GMT 0)
BJG: I was using Aquafresh Extreme Clean Toothpaste -It was causing the silent migraines. I use Crest (regular paste) and have no silent migraines. It has been 18 days since my last migraine and this is a record for me!
The cycle of my migraines would last usually 25-28 days out of the month with a break of a reguar migraine with aura for the rest of the month.
My neurologest prescribed Topamax for me which works well for the migraines with auras but honestly didn't work to well for the silent migraines. She also put me on abortive medication. She gave me two to try first to see how they worked for me-Frova which takes about an hour to work but does work and Imtrex the pill which takes about an hour to work but again does work. She also gave me Imtrex in injection form but I am to scared to use it because I heard of side effects-or I am just afraid of giving myself the shot-I don't know but I haven't used it yet!
My doctor also sent me to get an ECHO done to see if I had a PFO which they are finding links to PFO to migraines with auras. My ECHO came back and they think they saw regurgetation so they are sending me to a cardiologist. You might want to tell your mom to see about getting an ECHO done and checking into a PFO. You can find a lot a research on the web by puttin PFO and migraines into a google search. You will be amazed at what you will find.
I know how debilitating this can be. How it can take your life away. I hope your mom feels better soon and gets back to her wonderful life. I know she is lucky that she has a wonderful daughter like you that cares so much for her. Please tell her that you care becasuse if your mother is anything like me during my episodes she will try to pull away. I know it doesn't sound right but the only thing I could think of was how unfair it was to my husband and daughter that I was sick and they shouldn't have to go through this.
Posted 7/18/2007 3:55 PM (GMT 0)

Hey Snugglesrn,

I am so glad I read your post regarding the PFO and Migraine connection.  I saw a Neurologist, specializing in Migraines, at the University of Virginia Medical College, and he referred me to a medical study, the MIST II Medical Trial,  on the exact problem.  The link is:

 http://headaches.about.com/od/prevention/a/mistii_begins.htm

This should give you a great deal of information, and you might be able to participate in the study, which won't cost you anything, as opposed to having the tests done and having to insurance co-pays or other expenses.

I'm just waiting for a new testing sight to be set up in my state, as currently the testing sight is 6-7 hours from home, and I think you have to check in once a month for six months.

Read the information and let us know what you think.

Leigh Ann cool

Posted 7/19/2007 2:10 PM (GMT 0)
Thanks for that information. I will have to look into it. I had an Echo done in June and they seem to have found regurgitation. My neurolgist refered me to a cardiolgist who will see me in August to go over my results , which is very frustrating to say the least- Something might be wrong with you heart and your extremely high risk for a stroke but don't worry we will see you in two months! Sorry for the little vent I am just tired of the doctors right now-between the neurolgist, family doctor, cardiologist and now my dentist-who won't pull my tooth until he gets permission from my neurolgist and the neurolgist won't give permission because they feel they don't have to because the migraine has nothing to do with the tooth needed to get pulled I am just fed up!

Cranky1: Thanks again I will look into it right now. I appreciate the info!
Posted 7/19/2007 4:29 PM (GMT 0)

Hey Snugglesrn,

I really get your frustration having to wait to see a new specialist, which seems to take two or three months just to get an initial appointment. 

My last abortive has ceased to help anymore, and being highly suseptible to weather fronts, I'm getting a migraine every day.  I'm changing my PCP, and he's looking into prescribing my old abortive, Stadol Nasal Spray, which is the only one that worked consistantly.  My former PCP took me off of it last October, because she thought I was taking too much (it's a narcotic).  Well, geez.  If you get a lot of migraines, to have to hit the abortive a lot. 

Well, I went into total panic mode yesterday after two days in a row of migraine headaches, and went back to my old PCP's office because they take walk-in appointments.  My reason for going was to deal with the panic attack I was having, knowing that storms are predicted for every day the rest of this week.  I didn't see my old PCP, but the doctor I did see said she would discuss switching back to my old abortive for me.  I know it's bad to have two different doctors working the same problem, but I'm sick of having to fight the system.  Call me a "drug seeker" if you want, because technically I am.  I'm not trying to get drugs to get high, I just don't want to suffer through more migraines.  It doesn't seem that the medical profession can destinguish between the two.  It seems if you know too much about medications, dosages, etc..., you are automatically assumed to be a junkie.  Patients should not be penalized because they have a good understanding of their medical situation.  I hate when doctors think they are mind readers, and make assumptions about you based on arbitrary information.

I've got to stop venting now or I'll end up with another panic attack.  Wish me luck with one of my doctors.

Leigh Ann cool

Posted 7/19/2007 5:55 PM (GMT 0)

Oh Cranky  - we should form a group - I felt like I was writing your last post myself.  I have said it on here many times!  My meds work and then the office folks in the neurologist's office treat me like I am a crack addictwhen I need refills!  I loved how you phrased - call me a drug seeker, I am.  You are correct.  I guess I am, too.  I want the meds that keep me from hurting hours or days on end.  If I take what the doctor prescribed - Relpax, Prednisone, Zofran (if needed for nausea) and Dilaudid (ooooooh, that's the bad word right there), then I am fine!  Sooooo, why does everyone seem to have such a stinkin' problem?????  I am just like you - any time we have weather changes, specifically storms, I have a migraine.  I could become rich being a weather forecaster!!  But, now I have gotten where I try to suck it up and tough it out unless it gets really bad.  Then, usually, I end up in the ER for IV Dilaudid because it has gotten so bad the Dilaudid by mouth won't work.

Thanks for your post!  At least I don't feel so alone.  I hate to tell anyone these days that I take all those meds - people truly look at me like I am a crack addict.  Oh well - if migraine pain wasn't so bad, I would wish it on all the people that turn their noses up at me for taking my meds; however, I truly don't wish that pain on anyone!

Hope you get through the storms without pain!

Posted 7/19/2007 8:41 PM (GMT 0)
CRANKY 1 and baseballmomof3: I am so sorry to hear that your doctors treat you that way. I think what we have is a problem with our health care more than anything else. I haven't had a problem with my meds yet. I am fortunate enough to have a problem with my pain intake. Apparently I have an odd tolerance to pain- I have a high, high tolerance (they think it has something to do with the migraines but they aren't sure) My pain tolerance interferes when I have to go to the hospital because if I do get a new doctor (I try to get the same ones-I am from a small town- but it doesn't always work) they think I am drug seeking because I don't look like I am in pain but I am and my body just handles it differently than most people and I have to wait for hours until I get pain meds because they have to look at my old charts and call my doctors and etc... it just a big pain in the ass!!!
I hope you both have pain free days or as close to them as you can get!
Posted 7/19/2007 10:33 PM (GMT 0)
SnugglesRN: Thank you for all the information. It has been very helpful. My mother is hanging in there and I know we can get to the bottom of things but I am hearing there is no easy quick fix. I fell for anyone who have migraines and silent migraines. I will pass your information along to my mother and keep searching for her possible trigger. Thanks again and I wish you good health and much happiness.
Posted 7/19/2007 11:56 PM (GMT 0)

snuggles - just wanted to say one quick thing - it is not my doctor who is the problem!  He is actually awesome - he listens to me and then prescribes the meds that work.  The problem is his office staff.  It seems impossible to get past them to speak to him and they (I suppose they may be nurses but my guess is that they are med techs or the equivalent) are the ones that act like I am a crack addict.  I have mentioned this to him and he has acted like he will speak to them but I am sure that it is difficult for him to get staff and to keep staff so he probably treads very lightly.  What most people don't realize is that many doctors never know that their patients are having problems getting through the receptionist, nurse, etc.  Doctors usually don't realize how frustrated patients are because most of the time, I think, they never get the messages.  My doctor is actually great about giving refills, etc. (except on the Dialudid which he legally can't write refills for) and he tells me to call his office when I need a reill on the Dilaudid.  That is when I run into the problems.

Anyway, because he is so great, I just wanted to clarify.  Figure I am always the first to complain so I can at least write the positives, too!

Hope you are having a non-migraine day (sounds like something that Hallmark should make a card for!).

Posted 7/20/2007 12:03 PM (GMT 0)
Baseballmomof3: I am glad to hear that it's not your doctor that the problem lies with. It's ashame that the staff makes you feel that way though.

My problem lies more with the doctors passing me around like a hot potato. Like for example: I need to get a tooth pulled and because of the possible PFO and the problems with migraines mimicking strokes my dentist won't do anything without my neuro permission and my neuro doesn't feel that she should have to give it so she won't and tells me to tell the dentist to call my cardiologist which I don't have an appointment for until August -Meanwhile I need my tooth pulled before it gets infected-It's like a tug of war with me in the middle and I just want my tooth pulled right now. This is just one example they do this all the time even with questions that I have-It's really pathetic-individually all my doctors are really good but put them together they really suck!

So far since I change my toothpaste (which I think was the trigger) I haven't had a migraine. I have been migraine free now for 17 days and I am hoping it stays that way.
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